Wednesday, September 24, 2014

Being skeptical vs trusting

I was just paging back through my blog looking for a piece of info and have to be honest I am kind of astonished how much more optimistic I feel like I was 3 or 4 years ago.
It's not that I think I am really, terribly negative now but I don't think I have the same easy going, relatively simple belief in people that I used to. I wish I did!
I think I used to just believe what people (or Providers) told me without much second thought and only after something didn't happen did I (maybe) think about it.. Now I feel like I analyze everything people (friends, providers, some family) say to me and I wish I didn't, I wish I was more of the trusting person I used to be.
I never liked making calls or asking for help but I think I still believed when a Provider said something they meant it (and probably most of the time they do) but now I feel like I constantly have to remind myself they aren't going to purposely try to do something to hurt me or that just b/c I may not get an answer doesn't mean it's about me and instead it's probably about lack of time.
What it really boils down to is I don't want to be that person who needs to be reassured but I do feel like I am less trusting and question what someone really means/says and will they really do it or are they just trying to placate me at that moment.. Here is where I wish I could just trust!?! I know I often forget to ask the right questions at the moment and I sometimes say something in a way that at the time may not come off like I meant it to so I do worry sometimes am I offending Providers, especially those ones I really count on? I hope not but you never know..

Last week Dr.Bragg (Peds Neurosurgeon)asked that I call her Nurse or Secretary this wk and have them remind her to call me regarding her talking to her Codman Rep to see if they (Codman) had any smaller (lower profile, not sure what that means) valves that might suite our needs better... Ironically our having turned down the VP Shunt worked splendidly for the 1st few days and now isn't as bad as it was but it also could be better. It's almost as if we just need a way to simulate what taps do to be able to take off or drain more CSF consistently..
I did leave a message for her Nurse today but also happened to read her last clinic note tonight (I usually request copies for my records but more importantly so I can give them to my Cardiologist and to my Pain Mngmt dr). Anyways in it she talks about the cardiac issues and the affects she wonders if this is having on the headaches (I can't help but have wondered the same over the past few days actually which is odd since I wasn't quite aware that was her thinking!?) Anyways she just mentions in her note if the valve adjustment doesn't/didn't help she would probably talk to my Cardiologist and discuss with him possible need, sooner for cardiac surgery (oh joy) as she wonders if there is some oxygenation issue affecting headaches due to the cardiac issues potentially atleast partially affecting the headaches (so multifactorial)..
She mentioned the possible Cranial vault expansion (bone thinning) in her note but further talked about the cardiac issues and suspecting was this having an impact on our H/A issues. I do think there is some confusion about the degree of the cardiac (mitral) valve stenosis/leaking (it is moderate on the verge of severe) but given high heart rate often I could see how that could potentially affect headaches to some degree.. I also know I am not always the best communicator though some of the info was gleaned from my last blog post; as far as the headaches I don't think the VP shunt isn't working (another comment, part of why stated for tapping the shunt) but to me as in the past I think it's intermittently functioning or partially occluded and thus not draining at full capacity. This boils down really to I don't always convey what I am thinking or trying to say all that well though so isn't that big of a deal. A comment during the tap made last wk was how pressures where within normal though even Dr.Bragg commented that doesn't always mean a lot as my pressures rarely (though occasionally) get quite high when there is intermittent shunt issue but in the note it does mention "normal pressures" during the tap. I admittedly am a little confused by that but overall it seems like from her note she is wanting to try and help be it we con't to look at some shunt approach or be it that the headaches are partially caused by cardiac reasons and will she and my Cardiologist talk. I am hopeful maybe she really will call me sometime this wk (or sometimes in the past she would email whatever info she had which I am ok with to) and we can talk about the valve adjustment helping some and overall a potential plan be it shunt/cardiac/etc..
In reading through past posts while trying to find some info I happened to come across several posts I wrote not long after I began seeing Dr.Bragg and which talked about our early issues with the CSF fluid collections but also how these helped and oh how I wish there wasn't a way to make those happen!?! (not really possible).. It does make me wonder though as much as I am against the bone thinning idea (just seems scary from what many have said) would that be a more permanent means to recreate this fluid pockets/space for CSF? I don't know, maybe I just need to meet w this Plastic Surgeon? It certainly doesn't mean I have to agree to the surgery but gathering info isn't always a bad thing? I am not entirely sure if Dr.Bragg has yet talked to the Surgeon she would want to use.. guess I should ask.. Kind of scary stuff but gathering isn't consenting I guess..

I saw Physical Therapy yesterday which it had been about a mo., which we sometimes space out appts and in this case I had had to reschedule a couple due to other shuffling.
In any case he asked what was going on with the low back/Leg symptom(s) if anything so I filled him in on the great debate going between my PM dr and my Neurosurgeon.
He is normally a fairly conservative Provider ie he tends to try to help his pts avoid a lot of invasive procedures when possible but even he thinks we ought to give the injections a try and see if it either improves/resolves the symptoms or tells us the area of concern may not be what we should be looking at.
I've not heard anything back from my Pain Mngmt dr if she is or is not willing to do the injections now so when I pick up a copy of her most recent office note tmrw i'll ask her Secretary if Dr.B has mentioned anything.
In any case, will update when there is anything new,
We have a SS Teachers mtng tonight and are sorting out some potential changes there with how it is done week-to-week/month.
Thanks for stopping by,

Thursday, September 18, 2014

Peds Neurosurgery Appt (last of the week!)

I was admittedly nervous for today's appt. but it wasn't bad. We sort of are at a wall as far as what to do/try so she (Dr.Bragg) is going to go back and talk to her Codman Rep again I guess and, see if there isn't a lower profile (in thinking about that after I am not entirely sure what that means?) Codman valve we could try. I am not sure if there isn't another brand of valve (non-Codman) that might work but am guessing not if she hasn't suggested it.. She just asked that I call her Nurse or Secretary next week and ask them to have her call me.
Dr.Bragg did opt to tap the VP Shunt which if I got it correct the flow wasn't great but there was spontaneous flow? She isn't concerned that it is obstructed is what it comes down to.. It's good that the shunt is "working" but admittedly (not that I want surgery, I DON'T!) I also know I'd sure feel better as I know with absolute certainty it is a shunt issue and has something to do w/ how well the shunt is or is not flowing. Sure when we do revisions we may not get 100% H/A improvement but what we do get atleast gives me somewhat better energy, better appetite and I don't feel so tired so much of the time..
In a way I wish it would just have been clear cut or even better yet more than about anything I wish the shunts would just work optimally! I have zero doubt the shunt is atleast partially occluded as these symptoms mirror every other time I've had shunt obstruction/partial obstruction. Super frustrating!
As far as after tapping the (VP) Shunt we opted to reset shunt to the lowest setting (30) which she was hesitant to do but I think she also wanted to try offer some relief. I can almost always tell a difference within a 30-60min period if it is going to offer any relief and whether it was b/c she took a bit of fluid off when she tapped the shunt (I am not sure if she did) or it is from actually lowering the VPS setting from '40' to '30' but there is a bit of a difference. The only problem with this is we usually run in to problems the lower we set this shunt as it seems to drain, collapse, pressure builds forcing it open more frequently. Who knows hopefully it would last for some time? I am sure hoping though never hold my breathe (that may sound negative but just being realistic).
I am supposed to go to a Meeting in Minneapolis tomorrow and then fly home Sat. night, the meeting is for Lysosomal Storage disorders which is usually informative (mostly geared to Professionals so isn't dumbed down). I admittedly do wish I felt tip top, even with the shunt adjustment I don't think i'll feel as great as I do when the shunt(s) are working fully. Anyways, I often think I try to go about my life as normally as possible including the things I am involved in or have planned and sometimes just take extra breaks to nap or rest a bit. In any case I sometimes wonder, does going about these things hinder getting care (ie do Providers think if you can still do something like a mtng. you must not feel to bad (and it is true if I where really, really continually sick obviously I wouldn't go) so thus you don't get taken as seriously? I don't really know the answer to that but do wonder?
Because there's always something I forget to ask I forgot to ask if she had been able to talk to her Study Coord. about the potential to try to get IT approved at her hospital. She even asked if there was any other questions, I guess it just doesn't matter my mind gets a little overwhelmed remembering everything. I am just curious if this is a complete not going to happen idea or if there is any update..? I guess if I do talk to her next week I can ask her this then..
One of the other things Dr.Bragg brought up, which we've talked about before and I've written about here was the skull bone thinning (cranial vault expansion) and is something we circle back to frequently.. I think still we are at the same time trying to cross off or look in to any other options to help first.. Her thinking behind that is to create a bit more space for the CSF to circulate and thus help the shunts work better. I don't think it's even that rare of a surgery (actually in an MPS fb forum I just saw a little boy diagnosed w MPS I whom is having craniosynostosis surgery which I think may be similar as his Surgeon(s) are trying to avoid the need for a shunt and create space..

On an un-related not (I have lots of those) =) I've always written this blog as a way to share my experiences with MPS (and the related issues) with other families and secondarily as a way (in a way) to have a place to go back to to be able to look up a detail or past surgery info fairly easily. I never write with the intention that Med people might read it but apparently some do (that's almost a little intimidating) based off what the Cardiac Anesthesiologist had written in an email she wrote to me last year and what we talked about at todays Appt.
I don't really know who reads this or if all the time but even knowing a Provider(s) read it some is I guess in a way a good thing(?); a way for Med people to see we are human and not just our issues? Thankfully my Providers do seem good at the "whole picture" vs. 'Patients as just a diagnosis' but non-the-less I guess this is one place where I really share my truer feelings (good or bad?) on things.. I don't share a lot of my non-medical life on any forum but there are glimpses of it in some updates and in pictures here. Just is something I guess I've rarely thought about(who is going to read it) and maybe should more when I write appt/medical updates?
Anyways I am hoping whatever it was that helped a bit today really lasts as I want to go to the Mini-WORLD Lysosomal Mtng in MSP Tmrw/Sat! The Foundation I work for is sending me with the 1 request I take notes on anything that might be of interest to MPS I/research.
I am hoping to feel reasonably ok????